Karl McManus was bitten by a tick on the chest in July 2007 at a wildlife park on Sydney’s Northern Beaches. A week later he developed flu-like symptoms but, due to a lack of knowledge about Lyme disease in Australia, the tell-tale signs and the potential seriousness of the tick bite were overlooked.
Five weeks later Karl experienced the further symptoms of Lyme disease – sweat attacks, muscle twitches, mood swings and a darkening of his complexion. He became sensitive to light and noise and refused to see his friends. He began to lose dexterity in the fingers of his left hand and also started to get muscle wasting.
In November 2007 Karl saw a neurologist who acknowledged his muscle wasting and muscle twitching but, despite inconsistent diagnostic test results, diagnosed him with multi-focal motor neuropathy (MFMN). In December Karl was started on an immunosuppressive agent, intravenous immunoglobulin (IVIg) for MFMN. After each infusion he got worse and by the eighth infusion in March, his tongue started to twitch.
Karl’s own search on the internet indicated that he may have Lyme disease, but the official website by the NSW government indicated that there was no Lyme disease in Australia, so it seemed unlikely.
My medical search of the literature found very similar clinical cases to Karl’s. They had Lyme disease. Karl’s blood tests in Australia by the ELISA assay came back negative for Lyme disease. Karl could see that he was getting worse on the IVIg, so this treatment was ceased and antibiotics started. He then suffered a Herxheimer reaction (this occurs when large quantities of toxins are released into the body as bacteria are killed) which confirmed he had a serious infection and was supportive of Lyme-disease diagnosis. Antibiotics were than tailored to his tolerance levels.
It was not until April 2008 when we sent his blood to the US laboratory Igenex and his tests came back positive for the Lyme-disease bacteria Borrelia and also Babesia duncani and Rickettsia (both well known co-infections transmitted with Borrelia) that our suspicions of Lyme disease were confirmed.
At the same we found a journal article by Harvey and Martz in which Dr David Martz describing his own symptoms and recovery from what the neurologists had initially diagnosed as motor neurone disease (MND).
Harvey and Martz
Acta Neurologica Scandinavica, February 2007
We began Harvey and Martz’s treatment protocol for Lyme disease and Karl started to get his muscle strength back and was feeling better in himself. Then he got the flu and regressed. He experienced the symptoms of babesia and lyme – extreme night sweats and muscle twitches – as well as a loss of function in his hands. He could not find a doctor in all of Australia who would care and treat his neuroborreliosis.
There were constant denials of the existence of Lyme disease in Australian ticks, and efforts were made by doctors to diagnose him as suffering from something else – often MND, or multiple sclerosis (MS). Without proper monitoring he continued to deteriorate.
In early 2009 a trip to a Lyme clinic in Augsburg, Germany, which uses integrated medicine, proved very positive. On returning to Australia Karl continued with IV antibiotics and started to gain muscle strength again between July and October. However, in late 2009 his tongue became paralysed and he began to lose weight because he could not consume sufficient calories, so he was admitted to hospital to have a PEG tube inserted into his stomach.
The hospital staff refused to accept that he had Lyme disease and wanted to diagnose Karl as having MND or MS and classify him as terminally ill. They ignored his infection and treated him as if he had MND.
They restricted his fluid intake which prevented him from flushing out the toxins. They misdiagnosed his swallowing problem and prescribed thickened fluids which he could not move with his paralysed tongue and could not eat. He lost a further 5kg. Furthermore, a hospital dietitian assumed that someone with multiple infections could put on weight with 2000 calories per day, whereas a private dietitian we consulted calculated that he needed minimum of 3500cal/day.
Before entering hospital Karl weighed 55kg, could walk around the house if someone held his hands and was able to talk, although his speech was slurred. He came out of hospital much worse in every way. In four days Karl had deteriorated so much that he could not walk, talk and looked like death warmed up. The neglect by doctors, nurses and by the medical system accelerated his deterioration.
Karl passed away suddenly on 14 July 2010 after catching the flu – due to the paralysis of his tongue, the excessive mucus choked him.
During the seven months prior to his death we had managed to reverse the deterioration – he had put on 15kg and his muscles had stopped twitching, he had budding small muscle growth in his arms and he was feeling positive as he could feel his body starting to repair and grow muscle. His decline and death was due to the medical system ignoring his condition and refusing to accept he had Lyme disease and treat him accordingly.
He did not want anybody to suffer like him ever again.
The aim of the Karl McManus Foundation is to erode the barriers to the recognition and treatment of Borreliosis, especially neuroborreliosis, in Australia and to contribute to knowledge in the world about borreliosis and other tick-borne infections.
For a list of our aims visit the Mission Statement section of this site
For a list of our research directions visit the Research Directions section of this site
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